Living with Neuropathy - Welcome to the group

So Ive had symptoms now for almost 6 months. It started as restless leg syndrome and has now progressed to full on numbness in my right leg and foot with things now firing up in my left foot. Now I can't sleep at night and the thought of living like this for the rest of my life is almost too much to bear. I'm scheduled with a Pain Management guy for DRG stimulation trial. They've also wondered about SI joint instability. I would love to hear if anyone has had any luck with either. No oral meds have helped.

@rpenn
I have MGUS and TS-HDS antibodies. As you know this is not common. Please connect .

Welcome @lreed333, I thought I would jump into your reply to @rpenn and share a discussion link that might help you connect with other members with similar conditions.
-- TS-HDS Antibody and Small Fiber Neuropathy: https://connect.mayoclinic.org/discussion/ts-hds-antibody-and-small-fiber-neuropathy/

There are quite a few discussions on monoclonal gammopathy and IgM-kappa if you would like to scan through them. Here are the search links on Connect with the results:
-- monoclonal gammopathy - https://connect.mayoclinic.org/search/discussions/
-- IgM-kappa - https://connect.mayoclinic.org/search/discussions/

Good morning I’m excited to see this group and hopefully see if anyone else is dealing with some of the same symptoms. I’ve had back issues for a while restless leg syndrome for the last 10 years have had two back surgeries. The last one was a L4 L5 fusion I can walk Neil but now I’m dealing with neuropathy in my feet also having can’t hold onto things with my hands, dropping things they spasm and lock up my feet pins and needles they burn they turn colors starting to trip feeling numb at times starting to have a lot of spasms at night and during the day where it just locks up if I move it in a certain way on gabapentin, do you have high cholesterol but that was diagnosed in the early about 20 years ago it’s genetic in my family. I’m just looking for help. I’m waiting on the results of the EMG but the CT looked good thank you all just for any help you can give the neuropathy is getting so bad that it is affecting sleep and making my balance off and it is painful. Hope you all have a great day thank

Hi @mistibfaith, You have come to the right place. You are not alone with your symptoms and I'm sure other members can relate. I have idiopathic small fiber peripheral neuropathy but fortunately don't have any real associated pain, just numbness and a little tingling in my feet and legs. Best thing you can do, which Connect will give you a jump start, is to learn as much as you can about your condition and what treatments are available that might provide some relief. I also have degenerative disc disease which may be playing a part in my neuropathy by compressing some of the nerves. If you haven't already seen the Foundation for Peripheral Neuropathy website, it is a great place to start learning more about the condition, treatments and alternative therapies that may provide some relief.

-- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/living-well/
They also have a YouTube channel where they keep all of their webinars that I've found quite helpful - https://www.youtube.com/@foundationforperipheralneu4122/search.

Thank you so much for the support and information.

I am 69 years old. I had no obvious symptoms prior to the last week of January 2026. Sunday of that week I was feeling normal. By Wednesday of the same week I was not able to walk. I developed weakness in my legs on Monday, this got worse Tuesday and Wednesday and Wednesday afternoon I was in bed and my hip joints started hurting, I do not usually have hip pain, a few minutes later my feet and legs started tingling and my legs went numb. Both of my feet dropped completely. I managed to get around the house that day by pivoting on and off of a walker and scooting around on an office chair. On Thursday I fell and could not get up, the fire department took me to the hospital and had an MRI and they found arthritis and bone spurs in my spine, I had a laminectomy Saturday morning. I was given very little information on what to expect next. It is now the end of May 2026, I have had Physical Therapy in a rehab facility and at home. I am able to walk with a walker and occasionally I am able to walk unsupported, but not for extended periods of time. I am looking for more information about how long it will take to recover. Will the neuropathy persist for the rest of my life. While I was in the rehab facility and completely unable to walk I went through a period of depression and despair. That has passed but I still would like to know what else I could do to improve my outcome.

Hello @tazwillia, Welcome to Connect. I haven't had a back surgery but I'm pretty sure recovery takes awhile. I think it's good news that you are able to walk unsupported even for a short period of time. There is another discussion that you might find helpful.
-- When will I know if laminectomy was successful? Recovery time?
https://connect.mayoclinic.org/discussion/when-will-i-know-if-lamenectomy-successful-ams-recovery-time/
There are also quite a few members who have posted about having a laminectomy and neuropathy symptoms. Here's a search with links to the member discussions and comments if you want to scan through them while you wait for others to respond - https://connect.mayoclinic.org/search/.

Did your surgeon or care team give you any exercises you could do at home to help with the recovery?

@johnbishop I have exercises provided by my in home Physical Therapist. I worked with him for 8 weeks and he helped me to improve my strength and balance and I am continuing to do the exercises. Most of my frustration is when my neuropathy seeming to improve and a few days later the tingling, numbness and weakness returns. Overall I have definitely improved since February so I will keep plugging along and try to be more patient. I do not have any significant pain so I know many people have it much worse than I do.

Wow- so many of us suffering with this horrible condition. It has beat me down mentally and physically. I actually feel my left foot changing shape. My pain is chronic, and each day it continues to worse. The foot change and pain in the ankle area is new this past month. If I walk, I suffer for it. I was such a healthy outdoor walker - and a happy person - now I can’t remember who/how/when that person changed. I did get a handicap parking sticker and a medical marijuana card recently. I bought a topical THC-CBD - it helps a little , but not anymore than over the counter Aspercream. I was faithful on my back and foot exercises, however, the foot is becoming difficult to do. Going back to PCP - as I think it’s time to have x-ray of feet or MRI. My neurologist group is uninformed- unconcerned unfortunately. I made an appointment at Cleveland Clinic (1 hour away) as Mayo is 5-6 hours away…first available appointment is February 2027. Discouraged and down.